Partner Spotlight: Cholangiocarcinoma Foundation

Matt turned 40 with big plans. A healthier lifestyle. More time with family. But when unexpected symptoms led to a rare cancer diagnosis, everything changed.

Leading up to his 40th birthday, he decided to get healthier “to be there for his wife, son, and parents.” Matt started eating better and exercising in late Spring 2019. Despite these changes, Matt began experiencing some intense stomach pains and vomiting; he didn’t think much of it as he thought he had a nasty stomach bug. Around June 2019, he began experiencing an increase in vomiting and had increased trouble holding food down, and he began itching all over his body. Matt thought that his itchiness was caused by allergies. Being proactive, Matt changed his diet again and incorporated the FODMAP diet, thinking it would help. Unfortunately, none of this helped.

Things took a turn for the worse when Matt’s wife noticed his skin and eyes were turning yellow, prompting him to schedule an appointment with his primary doctor. In July 2019, Matt’s bloodwork showed elevated liver enzymes, so he was referred to a gastroenterologist in Boston. He completed a few more tests that showed his bilirubin levels were high, and scans showed that he needed stents to allow flow through his bile ducts.

In late July, Matt passed out at home and awoke in a large pool of blood; he called 911. Matt was rushed to Mass General Hospital and lost a significant amount of blood. The doctor advised Matt’s wife to prepare for the worst; Matt coded on the surgery table. It was touch-and-go, but Matt survived. It was this hospital stay that finally led to an official diagnosis: cholangiocarcinoma, a rare and aggressive cancer of the bile ducts in the liver.

Matt began chemo and radiation, and thanks to the support of his medical team, was qualified and listed for a liver transplant. While awaiting the transplant, he experienced some kidney issues, sepsis issues, and had several biliary drains to remove fluids and had 25 Endoscopic retrograde cholangiopancreatographys (ERCPs).

In 2021, Matt received a liver transplant that saved his life. Matt describes this beautifully in his own words.

From Matt’s Perspective

Five years ago, I received time I didn’t know I’d have. It’s been five years since my liver transplant for cholangiocarcinoma. That number doesn’t belong to me. It belongs to people who showed up, science that refused to stop, and a community that carried hope when I couldn’t. It belongs to the clinicians, nurses, surgeons, specialists, coordinators, and staff at Massachusetts General Hospital. You didn’t just treat a disease. You treated me with steadiness, dignity, and humanity. Every careful decision. Every late-night check. Every moment you chose compassion when no one was watching.

Matt and his care team

It belongs to researchers—past, present, and future—who kept asking questions when answers were uncertain. Because of you, treatments exist that once didn’t. Because of you, “rare” no longer means invisible. Because of you, hope has data to back it up.

It belongs to donors and donor families. Your generosity didn’t end with a decision. It became a future. It lives on in conversations, careers, relationships, and ordinary moments we often take for granted.

It belongs to the Cholangiocarcinoma Foundation family. Strength in Community. Hope in Research. You remind patients and caregivers that fear is real, but facing it alone is not required.

If you’re reading this as a patient, caregiver, clinician, researcher, or leader, please pause here:

YOUR PRESENCE MATTERS. The extra minute you give. The question you ask. The research you fund. The choice to show up again tomorrow—tired, busy, human. Those moments may not feel extraordinary. But they change lives.

Five years later, the lesson isn’t about survival. It’s about interdependence and how collective care extends, strengthens, and gives meaning to lives.

Thank you for being part of someone’s survival story. You may never know whose. But today, I do. And it matters more than you think.”

Getting Support

Thanks to the support of his medical team, a liver transplant, and the resources he found through the Cholangiocarcinoma Foundation (CCF), Matt is living life fully today—mentoring others through CholangioConnect and staying involved with the New England CCF CARE Team.

Matt has found strength in connecting with others who are also navigating cholangiocarcinoma. He mentors other patients with cholangiocarcinoma through the CCF’s CholangioConnect mentor program, a peer-to-peer connection platform that helps anyone touched by cholangiocarcinoma, at any stage of their journey, find a mentor to ask questions and get support from someone with personal experience with the disease.

CholangioConnect reminds others affected by cholangiocarcinoma that they are not alone. Through this program, these connections help individuals feel seen, supported, and more confident as they move through their journey.

Matt is also part of the New England CCF CARE Team, a dedicated group of volunteers providing local support to patients with cholangiocarcinoma and their caregivers through Advocacy, Research, and Education. Composed of passionate individuals with deeply personal connections to cholangiocarcinoma, this team aims to create a support network for patients, caregivers, and families in New England.

In recognition of Cholangiocarcinoma Awareness Month that takes place in February, the New England Care Team is hosting an in-person event from 3-5 p.m. at Mass General Brigham Healthcare Centers, 20 & 22 Patriot Place, Foxborough, MA. You can learn more about other in-person events and register for this event here.

Matt attended his first CCF Annual Conference virtually in 2020 while receiving treatment and looks forward to attending it each year. CCF is thrilled to announce the upcoming 13th Annual Conference, set to take place in Salt Lake City, UT, from May 1-3, 2026, with a virtual option also available. The 13th Annual Cholangiocarcinoma Foundation Conference will convene leading researchers, clinicians, patients, caregivers, and advocates to explore the latest advancements in cholangiocarcinoma and foster collaboration across the community.

This year’s conference also celebrates CCF’s 20th anniversary, making it a particularly special gathering.

This event presents a unique opportunity for patients, caregivers, advocates, researchers, scientists, industry representatives, and healthcare providers to come together, learn from one another, advance progress, and collaborate on problem-solving. Patients and caregivers find community in spending time with others who understand their challenges and can offer support and a sense of connection. We know this year will provide even more meaningful collaboration. You can register for the conference today here.

The latest data from the American Cancer Society shows a concerning increase in liver cancer cases, with cholangiocarcinoma now accounting for a significant portion of these diagnoses. With projections indicating it could become the third deadliest cancer in the United States by 2040, the need for advocacy, funding, and education is more crucial than ever.

Matt said, “CCF reminded me I didn’t have to walk this journey alone.” The Cholangiocarcinoma Foundation’s mission is to find a cure for cholangiocarcinoma and improve the quality of life for those affected. CCF understands that a diagnosis can leave patients feeling isolated and afraid. Whether you’re newly diagnosed or new to the Foundation, we are here to support you and your loved ones. CCF offers support groups, educational resources, one-on-one support, and additional support to anyone affected by this disease. You can learn more about CCF at curecca.org.

Matt’s story is a powerful reminder that hope is built through connection, perseverance, and collective care. With CCF's support, patients and caregivers are finding community, knowledge, and strength at every stage of the journey. His experience reflects what is possible when research advances, advocates speak up, and no one has to face cholangiocarcinoma alone.